A BIG thank you

I am so proud of our patients and their families! Together, we blanketed Capitol Hill and held meetings in the offices of 14 different Representatives and Senators from New England. The staff and Members of Congress in each office we visited saw firsthand what a difference access to pediatric specialists and subspecialists can make in the lives of their constituents. There is no better way to advocate for the Children’s Hospital Graduate Medical Education program!

Each year, I leave Family Advocacy Day feeling re-energized about my work and this year is no exception. The patients and families who traveled to Washington for this event took time out of their busy lives to speak up for some of the most vulnerable Americans. The elected officials and staff who we met are in the midst of solving some of the most pressing economic challenges ever to face our country. Yet, we all came together for a day to talk about our nation’s children and what we can do to keep them healthy.

Some highlights of my day include:

Dr. Rosen, the Herod family and I arrived for our meeting with Representative Frank Guinta (NH) just after he had been called away to a vote. We expected that we would sit down with his staff and they would relay our meeting to him later on. Instead, his staff walked us right into the Capitol and down to the House floor so that Rep. Guinta could step away and see us in between votes. For nearly ten minutes, with the chaos of the official business of our government happening all around us, the Herods had his full attention. Kylie’s mom and dad described the challenges they faced in finding the right diagnosis for their baby and explained how the many specialists at Children’s have been able to work together with them to help her thrive. Rep. Guinta asked how he could help and committed his staff to working together with the hospital on issues that impact New Hampshire children’s access to care.

While waiting for Senator Susan Collins (ME) to arrive for our meeting in her office, Lily (age 2) announced that she needed to use the potty right away! Sometimes, you just can’t wait. Her mom whisked her away. Of course, Senator Collins walked in just after Lily and her mom had left. Lily’s big brother Colby (age 5) immediately stepped up to the plate for his sister. What an advocate! He handed Senator Collins the trading card with Lily’s photo and story and helped his dad describe what Children’s Hospital Boston means to their family. And Lily made it back in time for a photo with the Senator!

There are many ways to measure the success of this Family Advocacy Day. In the coming days, we will count how many new cosponsors are added to the CHGME reauthorization legislation and analyze the follow up that we have with the many offices we visited. What we can’t measure, and the reason why we do this year after year, is the personal impact of hearing the true stories of our amazing patients and families on the individuals responsible for setting health care policies in America. Just as the families will remember this experience for a long time, the legislators and staff will remember their visit. For that, on behalf of Children’s Hospital Boston and the many children we serve, we thank you!

~ Amy DeLong

Reflecting back on our trip

We are home safe and sound.  We arrived late last night and are still in awe of everything that has happened over the past few days.

Tuesday was a whirlwind of one wonderful surprise after another.  First off, we were/are thankful that the only party that Kylie decided to partake in was on Monday night. There was a fantastic dinner/celebration with all of the other families, and we were able to connect with even more families that have such different stories but share all of the same feelings as our family.  That alone has been a priceless experience.

So after Kylie made it through the night, we had a fairly smooth morning and headed off to our meetings.  This is the part of our trip that Jon compared to “The Amazing Race”.  With morning meetings approaching and Kylie and Lily using strollers, the Metro commute from the hotel to Capitol Hill was a maze of weaving in and out of elevators and up and down escalators with the Watson Family.  We made it there with plenty of time and in one piece (which is all, and often more than we could ask for).

We were lucky enough to get a unique look at Washington.  Our meetings bounced back and forth from the Senate to Congress to Senate to Congress and lunch was somewhere in between.

Here’s a recap of our meetings:

Senator Shaheen’s Office:  This was our first meeting of the morning.  Though Senator Shaheen wasn’t able to make it we were able to take a lot of time to send our message to her staff.  We wanted to share our story and hope that education for pediatric specialist training will continue.  (Have I mentioned that Kylie sees over 2 dozen specialists?) We are dependent on specialists at Boston Children’s.  They are either spread out around NH or simply don’t exist here.  Sen. Shaheen’s office seemed very supportive, and it was a good start to getting over our nerves.

Rep. Charlie Bass:  Even though he’s not our (Goffstown’s) Representative he took time to meet with us and listen.  He asked excellent questions and seemed genuinely surprised that we don’t have access to all of these specialists in NH.

Rep. Frank Guinta: Our scheduled meeting ended up conflicting with a vote that needed to take place so we were whisked to a room adjacent to the floor and Congressman Guinta actually came out to meet us during a break.  It was all very exciting.  He was personable and seemed to have a huge interest in making sure that our family and others are able to have the specialty care they need.  We also had no idea that he has young kids of his own.

Senator Kelly Ayotte:  She was extremely busy but took time to listen and ask questions beyond the basics.  Kylie was also the “busiest” during this meeting and made sure that Senator Ayotte was well-aware that she (Kylie) is very skilled at blowing raspberries.

Some other surprises/treats that we weren’t expecting:

1. We got to beat the heat and take the special subway system below the Capitol Building.  This was really cool and often only used by Senators, Representatives and staffers.

2.  Their offices are tributes to New Hampshire.  Though the decor varies from office to office there are distinct pieces of New Hampshire in each and every office. The best was a panoramic view of Mt. Washington (passed down from Judd Gregg) in Senator Ayotte’s office.

3.  We had such great support from Boston Children’s (which shouldn’t be suprising anymore).   President & COO Sandi Fenwick came to two of our meetings.  She was fantastic with Kylie, and I was so impressed at how she was able to articulate and politely reiterate every point that we wanted to make.  We also always had  a staff member from Government Relations to keep things organized and again drive home our points. We are so appreciative for feeling that things went smoothly (because I’m sure they didn’t always, and we have no idea what any of the hitches and glitches were).

4. Even greater, Jon and I are so grateful that Dr. Rosen, one of Kylie’s specialists, was able to accompany us to ALL of her meetings.  He knows Kylie’s story and was able to flawlessly pick up where we left off. Among many of the highlights of this trip, one of the greatest is to know that her doctors and the staff at Boston Children’s really are that fantastic all of the time.

The flight home was a success!  Kylie sat in her seat and played one of her favorite games called “Kiss, Kick and Drop the Baby Doll”.  As soon as take off was complete she fell asleep.  Jon and I asked “Looking back, would we do it all over again?”  and we both agreed “Absolutely.”

~ Heather and Jon (Kiley’s parents)

A day on the Hill

All of our families kicking off their day on the Hill

Wow! What a day we had on Capitol Hill! All of our families did amazingly well in their meetings today. They told their stories to their state representatives and senators and represented Children’s Hospital Boston so very well. A BIG thank you goes out to our families for all their hard work today – especially for walking all around the Hill in 90 degree sunshine. You were all true advocates for the Children’s Hospital Graduate Medical Education program and Medicaid.

An important point

Jackie, Colby, Adam and Lily in one of their meetings

Our first meeting today was with Congressman Michaud’s office.  He will be sponsoring our efforts! We’re so excited!

~ Jackie (Lily’s mom)

A good feeling for tomorrow

Dennis Rosen, MD

Turning on the news tonight, all one hears is about the breakdown in negotiations between Democrats and Republicans on raising the debt ceiling and reducing the national debt. Will the United States default on its debt? Will cooler heads prevail, or will the country, with the rest of the world on its heels, be dragged into a dangerous vortex of economic chaos due to the inability of some to set aside politics for the sake of the greater good of the country? These are the questions which everyone is asking, and no one dares predict what will be seven days from now when the deadline arrives.

Many look on at the whole process with disgust and see this as a sign that this country’s political system is fundamentally broken, evidence of a real disconnect between those who were elected to represent us and the citizens who sent them there in the first place.

My perspective, though, is different. I am in Washington this evening, part of a delegation of patients, providers, and government relations people from Children’s Hospital Boston participating in NACH’s (National Association of Children’s Hospitals) Family Advocacy Day. Tomorrow we will visit the offices of several Representatives and Senators from Massachusetts, Maine and New Hampshire, all of whom have made time in their very busy schedules to meet with us. We will explain why continuing to fund pediatric specialty training is so important, and why Medicaid, which provides medical coverage for more than one third of the nation’s children, needs to be protected.

That some of the most powerful people in the land are willing to meet with and listen to us, despite everything else going on right now shows me that the system does, in fact, work. That those of us who come to make the case for those who cannot vote and have no political clout of their own find in Congress a receptive and eager audience proves that this really is a government of the people, elected by the people, for the people.

I have a very good feeling going in to our meetings tomorrow, and hope that we will succeed in making the case for supporting those measures which will maintain and strengthen access to high quality health care for all the children of this country. Hopefully, too, common sense will prevail, and our elected officials will find a way to resolve the debt ceiling and deficit crises as well.

~ Dennis Rosen, MD

Post party

Lily with her brother Colby and their parents at tonight's party

What a night!  We had the time of our lives.  NACH treated us like Rock Stars.  I reflect on the fact that all the children were laughing/smiling despite their everyday struggles.  Not a cry was heard…amazing.

~ Lily’s parents

Photos galore

Day 1 has wound down and we’re having a great time. The BIG party was such a fun way to cap off an exciting day in DC. Our photo gallery to the right is updated with all kinds of photos from today. Make sure you check them out.